These pages share our journey of adoption, parenting, and raising three kiddos with a wide range of special needs. We aren't brave. We aren't amazing. We just don't know if we would be able to handle a typical child.

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Monday, November 22, 2010

As the day draws near...

I've been trying to write a post all day. But all my thoughts just keep getting jumbled together and not making sense. So I erase it all and start over, only to find myself not being able to say what I'm trying to say. So here's the fifth try today.I am starting to feel the "just before MRI" nerves kick in. They make me want to call and cancel the MRI. They also make me want to demand that they give me the results that day. I got "the" phone call today where they go over the list of Abigail's diagnoses and special needs, arrival time, and when she can no longer have food and drink beforehand. It feels MUCH scarier this time. Because before we didn't know about the possibility of mastocytosis; and she may not have had it then. And now, the whole time she is having the MRI I'm going to be wondering if she is having a reaction, going into anaphylaxis, and if we will end up in the hospital for Thanksgiving. I think I asked the lady three times if they were doing things differently because of it. She assured me that she was the first appointment of the day so they could do something (I can't remember what it's called) to take the extra precautions. But really is that supposed to make me feel better. So you guys are ready should she go into anaphylaxis, but can't we just avoid that.But Wednesday I will get up and drive to Riley, do the procedure, and we will go to McDonald's afterward. She will be her almost normal self by the afternoon. I will feel relieved it's over, and anxious to get the results. And of course I will most likely have to wait until Friday because of Thanksgiving.And from there I don't know where we will go. Because I've never had anything but good results. And I don't know what to expect this time. I don't know how to react if they find something. I think I know where we will go from there based on my countless time spent researching, but in reality how do you decide between a risky surgery, chemo, or "wait and see" for your child; knowing that all three hold huge risk. And if she doesn't have one, how do you rejoice when your other NF friends are dealing with optic gliomas, plexis, and migraines in their children.It's pretty incredible how sitting in the doctor's office on May 6 of 2009 totally changed my life. I have amazing friends I would never have known. Thank you Tara, Cindy, Bridget and Vicki. I have learned so much. During Abigail's re-evaluation the other day I answered a question they asked and the woman looked up at me and told me I sounded like a doctor. Yes, I am becoming a wealth of knowledge about many things medical. And some days a small part of me wishes we weren't here. It wishes that when Abigail is pretending she wasn't so good with her doctor kit. It wishes that our money and time could be spent on driving to Indy for fun things like the Children's Museum, and Connor Prairie.But then Abigail wouldn't be Abigail; and that thought makes me sad. I wouldn't have met the woman I mentioned above; and that thought makes me sad. Yes it is both the beauty and pain of living in Holland that I am feeling right now.You can of course feel free to pray that I sleep well the next few nights, that the doctors extra precautions are the correct ones for keeping Abigail from having any sort of reaction, that results come quickly, and that we continue to find peace that surpasses all understanding.

2 comments:

Lots of prayers for your little girl. Also, I'm not sure what they are looking for but with Joey, they were looking for an optic glioma when they did an MRI and what they found was a healthy optic nerve. They did however find sphenoid wing dysplasia. Which is a wait and see sort of thing. Which I'm comfortable with.

Everything is going to be OK. Abigail is a strong little girl she will do just fine. I pray she doesn't have a plexi and that everything will come out normal (as normal as an NF scan can be). Everything happens for a reason. You adopted Abigail for a reason...we adopted our NF kids for a reason. When times get rough I sit back and think...what if? What if I didn't adopt my kids? What if Abigail never found you as her mom. Where would she be right now? Would anyone have even noticed her spots? No matter how hard this is for you, and how scared you are, you know it is what is best for your daughter and that is why you can't bring yourself to cancel that scan. Maybe God gave you Abigail so you can help her get through her NF, keep her safe and healthy, and so you can help educate other people on her disorder. This is what I feel god's plan was for us as well. God never gives us more than we can handle. You are an awesome mom. You are strong and you will get through tomorrow as well. I will keep you and Abigail in my prayers during this rough time. I'm glad I met you!!